Tag Archives: chronic pain

Its been eh…

I tend to only blog about my PsA when I am feeling absolutely miserable or wonderful.  Truth is a great part of my life is spent in the mid zone.  I wake stiff and achy, with trouble walking but after a couple hours I am perfectly fine to run a few errands and get some chores done, paint a bit, meet a friend for coffee, and run carpool. Actually most days I can do maybe two out of four of those things.  After carpool though most days I am in bed for the rest of the day.  Most my dance classes have been put on hold, except for tango, which although hard to get the energy up for, is gentle on my body and doesn’t wear me out.

I am very fortunate to have kids who are self sufficient and will do their homework without worry, a partner who not only takes over at home, but takes care of me when I need it, a part time job that I am passionate about with wonderful hours. I also have some amazing friends who understand when I disappear for weeks sometimes months at a time, because I am either too sick to go out, or feeling good so I am living manically and doing too much to have any social time.

So my body is Eh, but I am feeling grateful and content.  My meds are working, maybe not perfectly, but the fact that I can dance often and walk without a cane, and get out of bed every single day is good enough for me.  Life is worthwhile, every day, and I am living it.  I am not without pain, but who is?

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Filed under PsA, Psoriatic Arthritis

Give me an IV

If you know me you know I avoid as best I can prescription pain killers. It’s bad enough that I have my infusion and the Meds to counteract my reaction to it, I don’t need to put more ick into my body. I also just don’t like the way they feel. I lose ambition, feel loopy and slow and I am completely uninspired to do anything. I do however take more Aleve and Excedrine than anyone ought to.

I am having a bad flare up though. My chest pain has been so bad that it’s keep me from dancing and classes. and last night it kept me awake most the night. I found myself looking forward to my husbands 4 am alarm so I could turn on the tv for distraction. As is often the case secondary illnesses are also flaring up. Migraines, acid reflux, and allergies.

Days like this I long for those pain killers I so judiciously avoid. Or an IV of something that will just knock me out. But I know that they aren’t good for me in the long run and I need to look at the big picture. I am sure I will be dancing again soon enough, but for now forgive my laziness.

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Feeling Blue

If you know anything about my pain scale you know feeling blue is about as good as it gets!! While I was in Florida I had a bad string of migraines but after they faded I have been on an upswing. I am without a doubt that the Remicade has changed my life for the better. I am still achy and limping for a couple hours in the morning and I still get occasional heart attack like chest pain and have rough days, but I am feeling better physically than I have in years. In early July I started Salsa dancing, and often just could manage part of the beginning lesson, but now I am taking several lessons a week and able to stay an hour or two for social dancing afterwards. I feel blessed with a new vitality. I am listening well to my body when it tells me to slow down and take a rest for an hour or two, and find that in return my days have many more hours in them and I can be more productive.
I just want to remind others with chronic illnesses to not give up. Keep trying things until something works for you. This blue period I am going through might not last forever but if it doesn’t it will serve to remind me to keep trying to live my life to the fullest and to find medical and health treatments that improve my life.

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Filed under Chronic Pain, Coping, exercising with illness, Infusions, Psoriatic Arthritis, Remicade

It’s not easy being green…

The title of this is a quote from Kermit the frog…and I totally disagree.  I LOVE being green.  Blue feels like a pipe dream, but there are days where green overrides all else.  After a week of having high pain levels, I am so pleased to report a near perfect day yesterday.  (if you don’t know what I mean by being green, its that I rate my pain from blue to purple, where blue is no pain and purple is just kill me now pain.  The last week I was hanging around orange and red all week).

Yesterday when I woke I didn’t even limp when I woke.  There was no pain from lifting what was a heavy toothbrush the day before.  I had planned a short trip to nature that morning, just feet in the ocean, because I am a firm believer that nature heals and I had been away from nature far too long.  We only had a few hours before work to drive to the ocean, and then swing by Leucadia’s farmers markets for some of our favorite healthy treats and to see a couple of friends we were missing.  On the way there I saw a bridge surrounded overgrowth of trees and I just had to stop.  I have a love for cement and architecture and to see it just standing in the middle of an elven forest was amazing.  We walked out on the bridge and watched the swallows and other birds.  I felt well enough that if we had planned the time I would have gone on a little hike.  I made it full circle around the market without needed an arm to lean on and was still feeling green by the time I got to work.  During the day I had a few spikes to yellow, but I just sat by the heater or curled up on the sofa when that happened and they passed without having to take any medicine.  We stayed open late to work on some organizing and by the time I got home at about 7 I was actually able to cook up the exotic mushrooms we found at the farmers market.  I woke today stiff and shuffling like an old lady, but not with a lot of pain, and now just 30 minutes later I am back to green.  Of course now I have all these big plans for what I can do this week, and the first will be to see my dear grandma because thats the one thing I wouldn’t want to miss if the flare up comes rushing back.  It’s so easy being green.

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Fat and Lazy

In the last 6 months I have gone from chubby to downright fat, the evenings I spend visiting with family and watching tv. Yes I have food issues and yes I have illnesses, but in the past I have always been able to keep myself on the chubby side and avoid becoming obese. I can only manage weight with diet on a temporary basis, every “diet” becomes emotionally traumatic after any period of time. I have cut down on things like fried foods, empty calorie snacking, and cooking with a lot of butter, while at the same time not forbidding myself any of those things. I keep thinking I should join a gym again…or what I really want is a jawbone pedometer that will keep track of my steps with an app. It will also count calories.

I want the jawbone as if all I need is incentive and I will start walking laps around the neighborhood. I want it as if all I need is little hints to suddenly have a “healthy” life style. Hey, maybe I will even get some little dumbbells to wrap my aching fingers around and swing back and forth while I walk. Everyone walks…walking is easy! I know if I could just find the energy to get down to Best Buy and buy the little jawbone I will suddenly have limitless energy. In my head its my magic little pill to a slim body, to endless energy…to not feeling like my legs are being smashed with hammers with each step I take. I have a friend who on her day off spends the day cooking for the whole week. I might do that too if I can find a day off besides the one I spend in bed. Maybe not a weeks worth of cooking, but a big pot of greens and a pan of fried rice might get me through the days I grab fast food on the way to work because I woke up already with limited energy. I am sure there are things I can do that are reasonable. Instead I crave a little black bracelet that will constantly be reminding me of how lazy and weak I am. Days like today I should focus on being grateful I can walk. But since I can’t spend the day in bed anyways if I can find the strength and energy to drive to Best Buy and walk into the store..I might have to get myself a Jawbone, so I can start feeling like I am on the road to health again..instead of this road…

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Filed under exercising with illness, exhuastion, Pain, Psoriatic Arthritis

All I need

Flare up is still going on, but once the Aleve kicked in I was able to move around just fine without the cane, except for when I tripped over it. 

I know exactly what I need to get over this.  A full day in bed.  No pain killers or anything else can seem to get me over a flare up like a day in bed can.  I try to schedule myself a day off of everything each week so that I know that day in bed is coming and that I will soon get better and not worse.  That is not going to happen this week.  Both my days off consist of PTA meetings and lots of running my son back and forth.  Even if I can lay down for an hour here or there it would require me to mount the stairs more often than I probably can today. 

On top of the flare up I have a migraine.  My next “day off” is at least a week away, with plenty of obligations between now and then. It will be a relief to be done with the PTSA this year. Thank goodness we have such a good team at Warm Springs because I know I am not doing a great job as president this year. Between the Remicade and the Arthritis, Gallery and Migraines its just too much. I am glad I have done a fairly good job at stopping and passing up other volunteering opportunities. I have probably done more volunteer work than most people do in a life time, so I don’t need to feel bad about focusing on my own career and health at this point. The problem is, I won’t be able to focus on a thing if I don’t get my day in bed soon.

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Filed under Chronic Pain, Migraines

Daily Health Journal- Nov. 1, 2012

Yesterday was a big day for me.  I stayed home resting until about one then ran a couple of errand before class.  By the time my kids arrived for class I was energized.  I am so fortunate to have a job that I can plan my energy around and that I get so excited about that my body always seems to rally itself without fail.  I managed wonderfully all through class and didn’t even feel a bit of pain or tiredness until I was cleaning up.  By the time I got home I was exhausted and limping, which often happens, but feeling satisfied at another few hours spent changing the world in tiny ways.  Normally I would have limped up to bed and dinner would have magically appeared but that was not an option last night.  Last night was Halloeen.  On Halloween we have a family tradition of hosting a party for friends, neighbors and family in our driveway.

I pulled up and was delighted to find my husband and son had already decorated, got out the bbq, and tables, and had the whole thing ready to go.  My husband had even set up a candy passing out area for me, so I could feel like I was helping and not do too much.   It was  so great to see old friends that I hadn’t seen in way too long drop in.  My grandmother and Dad and Janet had adorable costumes, and my son’s band played to a crowd of teenagers and mothers.  I got to see my favorite little babies, and held them inspite of the pain my body was in.  I often felt like crying my body hurt so badly, but I experience pain all the time, and if I went and laid down the pain would continue, so I tried not to do too much, but enjoy the gift of friendship and love that surrounded me.  Too often I stay home because of pain, thinking if I drop in for a just a little, and am subdued because of pain, that I will just ruin the party.  Last night taught me that pain or not, my loved ones are happy to see me, and even those who have known me a long time, are perfectly fine that I am not the life the party.

For a while now I have not been able to hike and workout and my body, which was on the chubby side to begin with is certainly showing it.  I miss my outings with nature.  I miss my clothes fitting.  I miss not being able to do as much volunteer as I used to do.

Yet right now I am excited about the things I can do and the oppurtunity I have.  I have  a job that only requires short bursts of energy that I can plan for in advance, that in some way or the other touches my heart each day I am there.  I have family and friends that love and support me, no matter if I am healthy or not.  I have a rare golden oppurtunity right now of opening an art studio/gallery with my partner in an artsy town, that we will be making as comfortable as possible with my illness in mind, so that being in the studio won’t be any harder on my body than being at home.  Comeplete with a sofa and blankets in back, so if I get really bad I just need to close the doors and turn off the lights and get some rest.

Right now my body feels like it has been hit by a truck.  It hurts no matter how I move it or not move it.  But my heart and head is filled with love, satisfaction and the glow of oppurtunity, knowing that this life is worth living, no matter what my limitations and pain intensity.

 

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Filed under Chronic Pain, Daily Journal, exhuastion, Health, Psoriatic Arthritis